The YouTube Video of Ari Ne’eman and Emma Zurcher-Long

My fabulous husband, Richard Long, has edited the videos of Ari’ Ne’eman’s and Emma Zurcher-Long’s presentation April 2nd at CoNGO (The Conference of Non-Governmental Organizations in Consultative Relationship with the United Nations).

As Richard edited Ari’s terrific speech, Emma was in the room looking at the iPhoto library I keep on my computer, which is near the computer Richard was editing on. At one point Ari describes the Autism Speaks video when a mother describes (in front of her non-speaking autistic daughter, who attempts to hug her mother several times as she talks) how she thought about driving off the George Washington Bridge with her autistic daughter strapped into the back seat, but doesn’t, for the sake of her other child who is not autistic. As Richard had taken a still shot of Ari just at that moment, he needed to edit out the pause that was caused by the still shot and so had to repeat this portion of the video over and over and over.

Emma and I have discussed this video before and though I’ve not shown it to her I wondered whether she was ever in the room when either Richard or I watched it. By the fourth edit of that particular section, I looked over at my daughter who showed no outward sign of upset and whispered, “Emmy, is this upsetting you?” (I know, talk about asking the obvious…)

I am painfully aware that by writing about this I open myself up to all kinds of judgement and criticism, but I believe my insensitivity and slow response is an excellent example of the general malaise society has regarding messages like this one that Ari discusses and that are so cavalierly displayed with regularity not only by Autism Speaks, but a great many organizations and autism experts, which are then repeated in the media. If none of us are able to admit ignorance and our less than ideal reactions, but only point fingers at others, there will be no conversation and little will change. So I’m willing to reluctantly admit that it took having that section on repeat before it occurred to me to get my intensely sensitive daughter out of the room to discuss the Autism Speaks video in more detail.

This idea that our children and people (of all neurologies) hear these things, but because those who cannot communicate through spoken language are therefore thought to not be able to understand what is being said, is one of the more destructive assumptions made. And what about those who do speak, are their feelings not important? These kinds of messages, stated both publicly and privately without thought of the impact this has, encourages prejudice and intolerance, focuses on the suffering, not of the child, but of the parent because of the child, only fuels anger and fear. Meanwhile Autistic people’s feelings are ignored, their response and reactions to such messages are considered, if at all, of little importance.

“Come Emma, let’s go in the other room.” I suggested. Once outside I asked Emma if she wanted to discuss the video Ari was referring to. Emma wrote, “The video has a mom who is lost and cannot rationalize hope.” Then a little later Emma wrote, “Autistic people are not viewed as able beings, this view makes us suffer.” Read that again –

“Autistic people are not viewed as able beings, this view makes us suffer.”

After Ari’s terrific talk, Emma and I were introduced. Watch Emma writing her final sentence regarding autism and acceptance, which says it all…

It was a great example of Emma “multi-tasking” as she has described it. A few weeks ago when I asked her about this, she wrote, “Yes, it is hard for non autistic people to multi task as well as I can.”
That’s my girl!

Note to all: Ari was perfectly eloquent in his presentation, so all of the edits made were not done to improve the flow of his speech, which didn’t need any improvement whatsoever, but to cut the blackouts and clicking sounds as I attempted to take still pics of him as he spoke, not realizing they would be recorded. It’s a shame that Ari’s presentation was marred by all the edits I had to make. He spoke so very well and so powerfully. Sigh.

On a much happier note, I’m really glad that more people are getting a chance to watch Emma as she writes and “multitasks” as she puts it. What a wonder she is!

Every life has beauty and worth whether a person is “able minded” or not. Once our son, Patrick, who has Down syndrome, heard on a radio program something about the abortion rate for moms who find out their unborn child has Down syndrome. He was a teenager at the time, and his expressive language was not that good, but he understood exactly what was said. He said, “Those are bad people mom! Me not like it.”

As a child I had a cousin, about my same age, who had severe cerebral palsy, was non-verbal, and needed total personal care from her parents. My mother taught us that Elise, my cousin, was sent to our family to bless us. I was taught that Elise was an angel sent to her family, to help them learn a special kind of patience, and make them holy. I was also taught that all human life is sacred no matter the condition, or the age, of the person. We are here on earth to endure, to learn compassion, and to love and serve each other. A lot of people haven’t been taught these things and they don’t know any better for the way they think and behave. Those of us who know need to teach, and help, and encourage other families, so they can find the joy and the privilege in their situation. You and Emma are doing that. Thank you.

My daughter is 2.5 and newly diagnosed. She has lost most of the speech she had. I can not tell you how meaningful this video of Emma talking is to me. I’m learning so much so fast. I think the most valuable things I’m learning are from Emma. I will never question that my daughter is bright and competent. I will never stop trying to hear her words.

How amazing is that. I hung on her every word 🙂 And how interesting she is able to verbalize each letter so well, and even some entire words right after she’s spelled them, yet organizing speech to follow spontaneous thought is more difficult. I can see that with my daughter too. I’m wondering if you use an iPad at home?

That video of Emma made my week! We move alike (or rather, we multi-task alike). And I heart that she fidgets with her face too. I’m the only person I know who’s ever had someone compliment me by saying that I “would make a really awesome puppet.”

I also was really impressed by what a pro you guys are with the letter-board-writing process now. Just watching, I could feel the amount of focus/energy it must take Emma to inhibit the impulse to point to irrelevant letters, and to be motivated to finish her sentences, even when they take so many little steps. I can only aspire to such communicative dedication…I feel like my verbosity resembles what happens when someone can’t control their impulses while pointing to letters, except in my case, pointing is talking/typing, and letters are phrases.
[Seriously, people often ask me why it takes me so long to write “normal,” and I’m like “Well, first I write my thoughts all out, stopping every two or three words to try and fix the multiple spelling/grammar mistakes I’ve just made. Then after I’m done writing, I go back through to see if I like, actually wrote sentences. And then I go back through to select the clauses and sentences that actually made sense and were relevant. And then I take those out, and figure out what order they actually need to go in so that they’re comprehensible to others. And then I proofread so that the pieces all fit together again. At that point, I’m sometimes done.”]

I really admire and appreciate your openness to learning; “rationalizing hope,” as Emma puts it, requires so much humility and curiosity when being hopeful means re-learning everything you know about what it means to think, to be a person, to care for others, and so on. While hearing about Emma makes me feel like a person, and makes me happy and excited, it’s not necessarily what gives me hope for the future. Emma has always been Emma, and I have always been me, and there have always been Emmas like us. We’re awesome, but we’re not new. Reading about how your guys’ new perspectives and knowledge of Emma changes how you see the world is what gives me hope for the future.

I loved this! Ari is quite an eloquent speaker. It was wonderful being able to see Emma writing and as both of you have said she refers to it “multitasking”. It was somewhat like getting to meet Emma in person since it wasn’t just pictures or words. She truly is a beautiful, intelligent young lady. You and Richard are very blessed, Ariane! 🙂

Well done Emma!!! May I share your videos with my non-verbal music therapy clients and their parents? I want your messages to be heard! Sharing online is powerful, but I’m finding that personally sharing the words of autistic people is even more so.